Serve God love me and mend
This is not the end
Lived unbruised we are friends
And I'm sorry
Sigh no more, no more
One foot in sea, one on shore
My heart was never pure
And you know me
And you know me
And man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing
Love it will not betray you, dismay or enslave you,
It will set you free
Be more like the man you were made to be.
There is a design,
An alignment to cry,
Of my heart to see,
The beauty of love as it was made to be (x4)
We also put up a tree and had the sense to buy a fake one that was pre lit, so it even had lights. We only got four ornaments on it, I figure I need to leave something to improve on for next year. There was also a very successful trip to the Christmas party for where Claire rides horses. She was very excited to see Santa and as it turns out, Chloe was not. On the bright side there was a firetruck for her to play in so there wasn't too much crying.
Beyond that, we really didn't do much during the advent season. With that said, it has been a huge improvement from the last three years, so I am pretty excited about it. The thing that really made this year stand out over last year was that we got to be with family. Last year was a bit depressing doing Christmas just the four of us, Jared and I were the only two who could speak. Claire was hating life without her talker as we had just returned it from the trial and Chloe was more of a danger to herself because she could get into things but didn't have the understanding of what she was doing or consequences so she was a handful. What a difference a year has made! Claire has really started to be able to better express herself with her talker and Chloe has grown by leaps and bounds. Instead of sticking her hand in the fire she can now stop and say 'no that's hot no no no' which really helps, A LOT. We drove down to San Luis Obispo and met up with my parents and my brother. We took a boat ride on an electric boat in Moro Bay, Claire has always loved going on boats. This was Chloe's first trip and she wanted to get off and tried repeatedly to jump into the water, by the end of the trip she settled on steering.
Sometime after our boat ride Claire started having some extra weird neurological activity and that sorta put a damper on the cheer level for Jared and I. We tried and to just push through and enjoy the time with family and it was nice. It was the most fun we've had opening presents (my rett friends out there know just how horrible this activity is) since Claire was 1. I am guessing that night we just didn't get enough sleep or the month of advent caught up to us. But Christmas Day wasn't the smoothest of rides, although rather eventful. During the chaos of trying to keep both girls happy at the breakfast table,
Jared put the crayons in Claire's juice, which was a lot funnier than it was frustrating, only because he immediately labeled it a Captain Awesome moment. It was pouring rain outside so we had to stay in. Chloe made friends with many people as she went up and down the stairs and up and down the stairs. Claire fell asleep by the fire as I sat and cried, mourning all of the things that rett has taken from us, struggling to be thankful that at least she is doing well and still with us, thinking of the two families that had lost girls recently. We wrapped up the holiday with a family picnic in my brother's room. The only place in town was a taco shack and so that is what we had for dinner. It felt reminiscent of A Christmas Story and a small part of me wanted to break out into Deck the Halls with the ra-ra-ra from the movie, but I was too tired. We drove home that night, a little early. As we laid the girls down and got settled back in, it is good to be home, I am thankful for a lot and I am so happy that the holidays are over! Now onto fixing Rett syndrome in 2011, who's with me????
On a side note, I want to share this very exciting research. It pretty much says that what we are doing really works. Putting Claire in a rich environment really is critical to her brain development, so we will most likely continue to torture ourselves with fun stuff like this until we get the medicine in the trial, in which case hopefully we will be able to do the same fun stuff, it will just be less torture because her brain will fire better.
Clinical Trial For Rett Syndrome Launched
Study marks the emergence of disease-modifying treatments for autism spectrum disorders
BOSTON, Dec. 16, 2010 /PRNewswire-USNewswire/ -- Researchers at Children's Hospital Boston have begun a randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome, the leading known genetic cause of autism in girls. The drug, mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), is already FDA-approved for children with short stature due to IGF-1 deficiency.
The trial, now enrolling patients, marks the beginning of a trend toward drug treatments seeking to modify the underlying causes of autism spectrum disorders, rather than just behavioral symptoms such as anxiety or aggression. It follows research in animal models, published in 2009(1), which suggested that raising IGF-1 levels can reverse features of Rett syndrome by enhancing maturation of synapses —the points of communication between brain cells.
"We expect that therapy that stimulates synaptic maturation will serve as a model for pharmacological treatment of not only Rett syndrome, but of other autism spectrum disorders," says Omar Khwaja, MD, PhD, the study's principal investigator and director of the Rett Syndrome Program in the Department of Neurology at Children's.
Rett syndrome, occurring almost exclusively in girls, is an X-linked neurodevelopmental disorder causing severe cognitive, motor and language problems and autistic behaviors. Other features include loss of purposeful use of the hands; repetitive, stereotyped hand movements; slowed brain and head growth; and heart-rhythm and breathing problems. Although affected children appear normal during their first six months of life, symptoms emerge, tragically, between 6 and 18 months of age, a prime period of synaptic development.
The three-year pilot study will randomize 40 girls (aged 2 to 12) with Rett syndrome to receive the drug, known as Increlex® (Tercica Inc., a Subsidiary of the IPSEN Group) for five months. The study will use a cross-over design, allowing girls assigned to placebo to switch to active treatment after a six-week "washout" period. The main outcome measures will be improvement in neurodevelopment and in cardiorespiratory function.
Although Rett syndrome used to be seen as a degenerative, irreversible disease, recent research indicates that brain cells aren't actually lost, and the brain is structurally normal – instead, the synapses between cells are weak, preventing brain circuits from maturing. Rett syndrome's usual cause is mutation or deletion of a gene called MeCP2, which itself controls a group of genes that regulate synaptic changes in response to input from the environment. In 2007, working with a mouse model of Rett syndrome, researchers used genetic tricks to restore MeCP2's function in the brain.(2) The mice showed a striking recovery, suggesting that Rett syndrome, even when well established, might be a treatable disease – if only synapses could be built back up.
"This was an enormous intellectual proof-of-principle that we aren't wasting time thinking of therapies for girls who are already symptomatic," says Khwaja. "Before, it was thought that if there ever was a treatment, it would have to be given before symptoms appeared, and that once the disease started it couldn't be reversed."
IGF-1, the drug used in the trial, is indirectly regulated by MeCP2. It has been shown to enhance synapse maturation, and in mice missing the MeCP2 gene, treatment with IGF-1 ameliorated several features of their Rett-like disease.(1)
"There's been a big sea change in how Rett syndrome and other neurodevelopmental disorders are viewed," Khwaja says. "The synapses are very dynamic. They need to be stabilized, and if they don't receive the right stimulus, they'll naturally disappear. That change in paradigm has really affected the way that we look at treatments, and I think it brings a lot more hope."
The new view has already affected the way schooling and education of children with Rett syndrome are being approached. "There's more and more evidence in animals that enrichment and schooling can help synapses form and strengthen," says Khwaja. "The battle is getting the girls into appropriate educational settings. If you are repetitive, and give them ways to communicate, they actually can learn, and that's probably because you're reinforcing these synaptic connections."
The clinical trial is funded by the International Rett Syndrome Foundation, Autism Speaks and Harvard University's Catalyst Pilot Awards for Clinical Translational Research. For information on enrollment, contact Katherine Barnes (email@example.com; 617-355-5230) or visit www.childrenshospital.org/rett.
It might not look like that exciting of a picture, just some dirty dishes, but to me, they are so much more! With the background that I have in pastry, I love the candy cane and gingerbread Christmas themed stuff, for several years I had the honor of assisting on gingerbread works of art at the Westin and I am forever changed. In my soul I wish I was in the Midwest snowed in a baking cookies and other such holiday traditions that are cultural like that. So a few years ago, when I saw this set of mugs and dessert plates with joy on them, I decided it was something that I had to have. They have been very safe in my cupboard, although they have been lonely. Since getting them in 2008 I had yet to use them. Tonight was the night that that changed and it was wonderful! Not only did I get to use my plates and mugs, I got to cook for friends, which is one of my favorite things to do in the whole world. Erica and Maren came over for our advent conspiracy type craft night. I really didn't do much, I was more in a management role really. I had hands available to hold a tight knot or take excess trash away. Erica was the mastermind behind it all, doesn't she look crafty!
Maren, well, she gave a good effort, you can see that she had a few challenges. I kid, Maren is the craftiest of the crafties. She just happened to have a little bag of hair clips and earrings that she had made (who makes jewelry more or less wear it???) and left the cutest pair of little purple flower earrings that I think a certain 5 year old will be pretty happy about in the morning. Anyway, back to our night. I could go on and on about how we laughed, made a mess and sent Jared to the grocery store. It is a good story and I suspect pieces of it might end up out in the blogoshpere from my partners in crime. But for me, I just liked having friends over, a lot. I have been really blessed to get to have two moms like this close enough that they can come over, even if it is a two hour drive.
We did it, Claire had fun at her first birthday party with her peers. It was a little awkward to walk in as I had no idea what the birthday girl looked like or who her parents were. Claire goes off to class with Donna in the mornings so I haven't really met many of her friends yet. It was pretty crazy when we got there, kids running around like crazy, balloons all over the ceiling and Claire got overwhelmed pretty fast. Good thing I thought ahead and invited the amazing Sara to join us, she is our ABA trainer and is so good at helping Claire to calm down. We went for a walk and Claire came around pretty quickly. She is so brave, she went back into the party with a big smile on her face. We opted to watch from the window of the dance studio. It was pretty fun to watch the other kids dance, they had no idea how to break dance, but they sure tried! I always love seeing her bright smiling face after we do things like this with the rest of the world, but it always makes me sad, really really sad. I hate that the world doesn't know what to do with anyone who is different. One of the girls who is a friend to Claire asked why she wasn't feeding herself the cake with her own hands. On one hand it is sweet that she thinks that Claire should be able to do it, on the other hand it is so screwed up that she can't. I hate this game of having to walk on the edge, trying to keep one foot in the world of the typical people, where I know Claire loves to be and the other foot rooted safely in rettworld. I keep telling myself that this will get easier with time, and while I do believe that it true, I know that it won't get to the place where it will be easy. I guess I get the privilege of grieving for the rest of my life or so I hear. No time for that today though, we get to go to Jared's company Christmas party tonight. Two parties with the normal world in one day, I think I will be done for a while after this :-)
Here is a little clip of the kids dancing, you can't really see us sitting in the mirror, but Claire had a huge smile on her face, promise.
I honestly didn't think it would be possible, but we had a great Thanksgiving. Even better than that, we had a great Thanksgiving weekend. I knew that we were going in the right direction when Wednesday started well and before things got out of control, Jared called saying that he was on his way home. I got the pleasure of leisurely shopping all by myself for those last few things I had forgotten. One of the great things about living in hippieville is that they all grow their own organic feast so they weren't all in Costco, it was creepy how few people were out, but it was good. Since I was relaxed and had time to do whatever I wanted, I went to Whole Foods to get some cheese and olives so we could have a nice antipasti for dinner. Much to my delight, while I was there they announced that the fisherman had just caught a bunch of crab that morning and he was there selling them, already cracked and cleaned. How could I not? It was such a great end to a day, just a Wednesday, but none the less a day that we decided to celebrate. I think that part of why I have such a hard time with holidays is because it sometimes feels forced. Be thankful NOW give gifts to people NOW and the only reason why we do it on that day is because everyone else is. Of coarse it is fun to do what everyone else is doing but sometimes you just don't feel like it. With the history of Thanksgiving day being as sad as it has been, it felt so good to genuinely celebrate the day before it. It just felt good to genuinely feel, something that is really hard to do when you are as tired as I am. So with the momentum of our crab feast and two happy little girls we went into...dundundun...the holiday, and it was good. I got to cook all morning at a casual pace while Jared watched the Macy's parade (which makes my skin crawl) with the girls, it felt like a pretty normal family, weird right? We went to a friends where we deep fried a turkey, which is awesome, vasts of hot oil make everything better, Chloe played with Luke and Claire fell asleep watching football after showing off her super awesome standing skills. We went home super full and it was good. Friday stated a little slow, we didn't know what to do and somehow we ended up going shopping. You didn't think I was going to say THAT did you? Claire and I hit the Carter's store for a bunch of super comfy clothes for both of the girls, we even got matching holiday pj's (see flickr to right). Feeling the exhilaration of having completely lost my mind, we went to the BIG mall. I have a special place in my heart for The Body Shop. Jared loves me so much that he dropped me off and fed Claire lunch while I went in there all by myself! The smell of that place takes me back to my senior year, back when I could take 4 bathes a day if I wanted. I did the unthinkable, I purchased 4 things and they were all for me. I have made an early resolution starting today, I will take a bath or a long enjoyable shower at least once a day. That's right, I am going to take 20 minutes every day just for me, I am so excited! I am completely amused that it took black Friday to get me to go out and do something like this for myself, God does have a good sense of humor. The weekend was great as well, I enjoyed a bath, Claire and I went to see Tangled and we purchased our first Christmas tree in the last 10 years. We also went out after bedtime to look at the lights in the park and watched some football. I am so content and relaxed and ready to soak in the advent season as well as the festival of lights. Sitting back today reveling in it, knowing that it might be another 5 or 10 years before we get this again, so I will bask in the glow of a holiday gone well for as long as I can. To those of you in that special place in my heart, the ones with daughters younger than Claire, please have hope, there is life after Rett Syndrome, it is different, but it can be good, the potential is still there!
I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!
It has been a few months since Claire got her voice and I think it is fair to say that it pretty much has changed our life. I have had contact with a few different families who are looking into a communication device for their daughter so I thought I would blog about why PRC has been as amazing as it has been. At the root of it all is one phase that Claire says around people that are new to her "This is my talker, it helps me speak." Prentke Romich (PRC) was first recommended to me by somebody that I considered to be an adversary. Claire was 3 and had just started in the county autism preschool. The process of getting there had been comprised of one ridiculous evaluation after another, so I assumed that when the person came to do the assistive tech evaluation, she too would completely miss Claire. I told the lady that we were looking into MyTobi as there was an eye gaze controlled computer that was coming out that Claire could use as a communication device. While the lady didn't completely get Claire, it turns out that she is some sort of genius with a PhD that teaches about this stuff at the college level. She gave me her card and really encouraged me to look into PRC. At the time PRC didn't have a device that used eye gaze and I knew that it was all about access. A few short weeks after that PRC announced that they were releasing the EcoPoint to go with the Eco14. I still had no idea what this meant, everyone in the rett world (which is pretty much the whole universe from our perspective) was going with Dynavox and MyTobi. The Dynavox rep brought their eyegaze system and Claire was amused, but barely. Next in line was the MyTobi rep. Claire did great for the one hour that she had to play with it. There was a Christmas tree and she popped the ornaments. She also enjoyed an activity that had animals and the sounds that they made. Third up to bat was PRC, I still had no idea what the difference was between all of these, I was learning as we went. I was absolutely blown away by Claire's response to the Eco. It was language, not games and she loved it! I have never had a doubt in my mind that Claire has had a language problem, she just couldn't talk because Rett screwed up her body. The Eco was the perfect solution to it. It does just that, it helps her talk. PRC uses this really cool language system called Unity. I have to admit it was weird at first. The icon for "want" is that of a jailbird in black and white stripes looking at a wanted posted. It was much more abstract for me than it was for Claire. The coolest part about unity is how it is organized. It really capitalizes on motor planning. So once Claire gets the motor pattern for something, it is pretty easy for her to get to. It has given her access to so many weird things that I didn't expect her to say. Like calling her sister dumb or announcing that her dad was leaving late when the phone rang during dinner. Having access to language, to whatever she wants to say and not just pages about topics that I think she would enjoy has really helped her to grow into the 5 year old that she is today. She is really normal. Sure she gets mad as hell because she hates the limitations of her body sometimes. But for the most part, the talker has helped her to deal with that and say what upsets her. I want to really encourage anyone out there who is looking into a talker with or without eyegaze to look into PRC and their products. They have had nothing short of absolutely fabulous tech support as I have had my programming challenges and a few quirks. Lastly, from a parent perspective, this is super low maintenance. If the best option for her would have been high maintenance, we would have gone with it if. But it is so nice that because it is a language system, there is really very little programming. Sure we put pictures of our family in it and she has all of her music on a songs page. But she really uses it as her talker, sometimes a keyboard if we want to type something she can do that to. It is not a game, although it has go fish, uno and a bunch of other fun stuff on there. It is her voice, her access to spoken language and it has changed our life, to say we are grateful for it seems like and understatement, but that is the best I can come up with.
Don't get me wrong, October was a lot of fun. It was just a lot! My poor little brain is still pretty sore from just how much was in October. It was mostly highs, with a few lows, it was just a lot. I am so glad that November has come, Thanksgiving has always been my favorite holiday and I find the transition at the end of fall to be remarkable. The last three Thanksgivings have been the exception. The last meal that Claire fed herself was Thanksgiving 2007. Ever since then, I have had a hard time even thinking about it. But Claire is doing so well right now, after the huge success of the birthday and our first year of trick or treating, I am thinking that we are on a role. It also helps that Chloe is coming into her own, for lack of a better way to say it. She has given good balance to our family. Chloe has also taken me to new levels of exhaustion as I struggle to balance making everything super accessible for Claire and out of reach for Chloe (certainly a battle I will forever loose). As the wind dies down and I attempt to savor the season and all of the wonderful that my life is, it is hard. I don't mean that it is hard to savor, I mean that life is hard. I am wrestling with the concept of living in a storm forever. Of coarse there are good days and bad days. But the good days aren't easy, we just smile and laugh more. So the question swirls in my head, how do I live in a storm. I have heard "Life's not about waiting for the storm to pass, it's about learning to dance in the rain." and I hate that phrase. It is cute and if it gives relief in a hard moment then great, honestly I love rain, the thought of dancing in rain makes me very happy. But storms are hard. Feeding Claire for at least 90 minutes a day is hard. Balancing everything that it takes to keep Rett Syndrome from eating her alive is hard. Trying to be something more than a caregiver is hard. I think I am getting to a good place where hard isn't bad, it is just hard. My hope is that I can take that, and enjoy the beauty of my storm. Much like the monsoons that I grew up with. There was awe inspiring lightening that would fill the sky. Water would blow so hard it would go under the doors, trees would blow over, cactus would be uprooted. It was such a demonstration of beauty and power. It was great to take in, but putting the yard back together was sure a chore. Replacing roof tiles, getting the furniture out of the pool and so on. I see the next few months as a bit of a monsoon for us. It comes around the same time every year, is fairly predictable, there is always wind and lightening and a terrible mess. That is what my life feels like on Rett Syndrome, a monsoon. However, I have learned that if it starts to hail, I will not put on my swim suit and go dance in it. Yes, when you live in Arizona weather really is that exciting, and I was young, but I learned my lesson.
I was going to wait and write this on our anniversary, but I just can't wait. On Nov. 6 we will be celebrating 11 years of marriage. Not 11 years of good times, 11 years of marriage. But I have to say that it feels like the celebration of us has already begun a little bit, and I am really excited about that. In particular, the last few years have been very hard, there were times that I really didn't think that we would ever celebrate 11 years. Rett Syndrome seems to have a way with ruining marriages, I would be a liar if I said it hadn't given us a run for our money. We came up with the name Captain Awesome for those moments that you really do try to do something, but for one reason or another, it just all goes sideways, like putting Claire's shoes on while she is screaming bloody murder and then she can't walk, come to find out they are on the wrong feet, when Jared does it he is Captain Awesome and when I do it I am Miss Amazing. I love our nicknames, it gives us both the freedom to just screw up because our life is too hard, it helps us to laugh at ourselves and with ourselves. Last night Jared insisted that we watch Beauty and the Beast (we just got it this week!) with no kids. That's right, he loves Disney princesses, to the core. Claire has sure left her mark there! So we sat on the couch and had a great 2005 BV Cab (sort of sentimental, we were in napa for that harvest, days before Claire was born) with pizza and watched Beauty and the Beast. Just made me smile, I am so glad to be stuck in this mess with one of the greatest men to have ever graced this planet, I wanted to shout it from the mountain top, but I am too lazy to hike, so I figured I would blog, close enough?
I know that I have been super bad about posting lately, I promise I really am trying, it just doesn't seem to happen. I feel like a huge update is due but it is too much to take on right now, so I will just stick with this little slice of the story. Today, the highlight of my day has been Ducati. Weird right? For many years I have had a love hate relationship with that word. It is the company that Jared works for and it pays our bills, for which I am very thankful. A lot of the time I feel like all the work might not be worth it and that is when I have a more hate relationship with it, but today it is love! Let me give you a little background. Jared LOVES motorcycles. In fact, that is how I hooked him. I was the only girl in our school that pretended to like motorcycles, so he talked to me, and my evil plan worked, a plan that began in 1997. Soon after we married Jared got his first bike and has always had one since then. I have always said that I couldn't be married to him without it because he gets so cranky when he hasn't rode in a while. Enter life, he is at the top of the motorcycle world. In December we purchased the bike that he always dreamed of, 'the pearl'. Jared thinks that he is a pirate and likes The Pirate's of the Caribbean way too much! So he has a blacked out bike that he named after the ship in the movie. He really loves this bike, he takes pictures of it by the ocean he likes it so much. Through this whole little Rett shitstorm it has been his outlet, the closest thing to therapy. So you can imagine the fear inside me when I figured that we needed to sell it. The accident that I was in 18 months ago has been very expensive and we still haven't settled, so we need money. Lucky for me, Jared has been hating his job lately, so he quickly warmed up to the idea. Not only did he warm up, he sold it within days! When we got up this morning, the wire had come through, the pearl was sold. We both felt a huge sigh of relief, happy that the whole thing went so smoothly. I am so proud of Jared! He has really let go and moved on in the healthiest way I can imagine. He is looking into mountain biking and some other things that he could do to get a release, he is even getting excited about taking both girls out for bike rides so I could stay home ALL BY MYSELF!!!! I have to admit I really like that idea. As I have a huge grin on my face because I feel like I have won the battle against Ducati, Jared says he got an email (which are normally Ducati related, back to resenting). There is a dealer in Florida that has an open house every year. I guess he just woke up and thought he would do something super awesome and is doing a raffle and silent auction because of Claire, to benefit IRSF. Wow! I think that the part that has meant the most to me is the wording that was used. You can click here to see the newsletter that went out and the explanation of the event. So now the pearl is gone and Jared is feeling loved by Ducati, can a girl have her cake and eat it too?
September 1st was not only the first day back to school for us, it was the first day of Kindergarten! How ever did that happen? It was also that first day that Claire rode the bus home. I am so proud of my brave little girl, she loves riding the bus and is really enjoying her independence. I am really enjoying two less trips all of the way down to school. Claire has therapy the three other days, so for now, it is just twice a week home. Once we get the classroom situation settled in, I think she just might even ride the bus to school, so exciting! The classroom situation, there always has to be struggle to make a story good, right? At the start of the year, Claire was slated to be in the same preschool/kindergarten class that she was in last year. The problem with that is there were a bunch of rookies that got moved up into the class and it was chaos in there. Claire really does pretty well in chaos, but this was a little much. So I asked to see the k-3 class. I was able to see it that Friday and the same day get confirmation that she could switch! I seriously don't think we have ever had anything happen that easy. Wait a minute, maybe that was too easy, it got more complicated. We were told that today would be her first day in the new class, but it didn't quite happen like that. You forget just how unique your kid is when there needs to be a complete state of the union before moving to the classroom on the other side of the parking lot. I am actually really happy that both the old and new team are taking the time to be sure that no details get missed, Claire is really surrounded by a lot of amazing people. So hopefully next week she will be in the K-3 class as her new home, then we will start integrating her into her mainstream class. Eventually we will get all settled in and it will be Christmas break, oh well!